Chief Executive of The Alzheimer Society of Ireland.
By 2021 the number of people with living with dementia is expected to rise to 68,216. More than 60% of people with dementia live in the community cared for by 50,000 family carers with patchy, uncoordinated or no support.
The Irish health and social care system is failing to adequately support people with dementia and their carers where they need it most, in their own homes and communities. Dementia is one of the most significant health and social care challenges facing this country today, with 48,000 people currently living with the condition. If the current trend continues, as in if there is no slowdown in the precipitous rise, the number of people with dementia will treble in a generation.
However, although the cost of dementia care ranks higher than stroke, heart disease and cancer combined healthcare spend for dementia continues to be substantially lower than these conditions. The overall cost of dementia care in Ireland is just over €1.69 billion per annum; almost half of this substantial cost is borne by family care; 43 per cent is accounted for by residential care; formal health and social care services contribute only 9 per cent to the total cost.
People with dementia who wish to remain at home and live in our communities for as long as possible must be supported to do so. At present 63 per cent of people (30,000) in Ireland with dementia live in the community and investment in long-term care should reflect this reality. Nursing home care should only be considered when a person requires a high level of care and not as a result of inadequate community supports.
An Expert policy paper, commissioned by The ASI and independently prepared by Health Economist, Dr Dominic Trepel, has revealed that home care versus long-term residential care results in better quality of life for the person with dementia, but at approximately half the cost. The Health Economist referenced findings from a European study which revealed that the average European cost to care for a person with dementia in a residential setting is €4,491 per month, compared to €2,491 for home care. Using this analysis, home care is almost half the cost of institutional care. However, supports for people with dementia who wish to live at home for as long as possible are patchy, uncoordinated or simply non-existent.
Dementia-specific home care is person-centred, consistent and involves continuous care, provided by dementia trained staff in partnership with the person with dementia and their family carer, while promoting independence and inclusion. By empowering the person with dementia and their family members, appropriate home care helps to avoid crises and delays admission to institutional care. The difficulty with the current model of generic home care is that the care staff may not be trained in dementia care, the care can be less about spending quality time and enabling the person and more about carrying out specific tasks which creates a dependency, and does little to promote independence and can end up further increasing the challenges people face when living with the condition. Many people with dementia unnecessarily end up in hospital in costly crisis driven interventions which could have been avoided if the correct supports were in place in our communities.
As the precipitous rise in the incidence of dementia continues unabated, the Government must act with urgency to afford people with dementia the basic human right of living in their own homes and communities for as long as possible. Staying at home should always be a viable first option for a person with dementia; however, currently a diagnosis of this difficult condition is worsened by the ensuing struggle to access quality care and support post-diagnosis.
Here at The Alzheimer Society of Ireland our Irish Dementia Working Group is not only working tirelessly to banish the prevailing stigma surrounding dementia, but is also lobbying for better supports in the communities.
Chair of The ASI’s Irish Dementia Working Group, Helen Rochford Brennan, who has Early Onset Alzheimer’s, said: “ I am part of the 63 per cent of people with dementia who live at home, and as part of the community, I should have access to supports that will help me to remain there. When I was diagnosed at the age of 61 there were no services tailored to help someone my age which left me isolated and afraid. There is simply no ward like home. We urge the government to support change for dementia.”
Our vision is a community that respects, supports and empowers people with dementia; a community in which people with dementia are socially and culturally valued; a community where people with dementia still actively participate in a safe environment. However, they need adequate supports to be able to do this. Political will and leadership are what are needed to ensure there is a strategic approach to dementia care in this country.